The IMF first declared this global event in 2009, with the notion that increasing awareness of the disease could lead to early diagnosis and increased funding for researching.

This year, we are pushing the "Knowledge is power" message.

"The majority of patients have never heard of myeloma before their diagnosis," IMF President and Co-Founder Susie Novis said. "The IMF is proud to lead the charge in raising myeloma awareness across America and around the world."

Kyprolis (carfilzomib) is currently under accelerated review by the European Medicines Agency (EMA) for treatment of patients with relapsed multiple myeloma who have received at least one prior therapy!
"Achieving deep and durable responses for patients with relapsed multiple myeloma is critical towards extending the time they live without their disease progressing," said Pablo J. Cagnoni, M.D., president, Onyx Pharmaceuticals, Inc. "We look forward to working with European regulators to potentially make this important medication available."

The US Food and Drug Administration (FDA) on Monday approved panobinostat for the treatment of myeloma. Marketed by Novartis under the name Farydak, panobinostat is an HDAC inhibitor intended for patients who have received at least two prior therapies. The safety and efficacy of panobinostat, which is used in combination with bortezomib and dexamethasone, was demonstrated in 193 clinical trial participants. "The approval is obviously good news for the myeloma community," IMF Chairman Dr. Brian Durie reports in his blog.

In response to the interest in Takeda’s ixazomib, an oral proteasome inhibitor, the IMF has assembled a new resource page on its website that provides a rundown on the drug’s progress through clinical trials. In one of its four ongoing Phase III trials, ixazomib recently achieved its primary endpoint of improving progression-free survival at the first pre-specified interim analysis.

In November 2014, the FDA’s Oncologic Drugs Advisory Committee advised the agency that, based on the data reviewed, the drug’s benefits did not outweigh its risks for patients with relapsed multiple myeloma. After the meeting, the company submitted additional information supporting Farydak’s use for a different indication: patients with multiple myeloma who have received at least two prior standard therapies, including bortezomib and an immunomodulatory agent.

The IMF’s research arm, the International Myeloma Working Group (IMWG), published an important new study on the assessment of elderly myeloma patients in the journal Blood. In the paper, the IMWG introduces a scoring system developed to classify the frailty of elderly patients. The international study, which analyzed data from more than 850 newly diagnosed patients, found that the IMWG frailty score predicted mortality and the risk of toxicity in elderly myeloma patients. The frailty score could be a helpful tool in better assessing patients and providing them with more suitable therapies

There was important news for myeloma patients this week as the US Food and Drug Administration approved Revlimid in combination with dexamethasone for newly diagnosed myeloma patients. Revlimid has already been in frontline use off-label in the US, but as IMF Chairman Dr. Brian Durie writes, the new approval raises “many issues which will limit ideal global access and use.” CLICK HERE to read Dr. Durie's blog.

With less than a month until March begins, the IMF is getting the ball rolling on Myeloma Awareness Month (#MAM). Sharing your story with even one person can help spread awareness, but with the internet at your fingertips, your story has the potential to inspire and educate thousands. Stories from patients and caregivers can inspire others to get their symptoms checked or go for a screening they’d been putting off. These stories also provide hope and support to people who may be going through difficult times. CLICK HERE to share your story, a lesson, or a piece of advice.

Have you ever felt like you were hearing a foreign language during a visit to the doctor? Myeloma brings many new concepts and medical terms to understand, including your body’s anatomy and systems, types of treatment, clinical trial terminology, and more. It can feel overwhelming at times, but the IMF is here to serve as your personal translator with handy resources, such as a newly updated glossary of myeloma terms and definitions. CLICK HERE to read and bookmark the new glossary.

With a recent measles outbreak in the US placing attention on the disease and the measles vaccine, IMF Chairman Dr. Brian Durie weighs in on the measles and myeloma. For myeloma patients, the chance of contracting the measles is low because most adults were inoculated when they were children and are therefore immune. In fact, many myeloma patients were ineligible for Dr. Stephen Russell’s Mayo Clinic measles virotherapy clinical trial because they were immune to the disease.

If you are a myeloma patient with bone disease (osteoporosis, lytic lesions, or even hypercalcemia), you will want to read our latest updated publication, "Understanding Bisphosphonate Therapy"
This booklet is devoted to therapy that is given to patients with myeloma bone involvement. Approximately 80% of myeloma patients develop bone disease. Bisphosphonates help to prevent skeletal complications of myeloma. Treatment with bisphosphonates reduces bone damage and, when the myeloma is well controlled, allows bone healing to occur.

The IMF is continuing the weekly web series #AskDrDurie with IMF Chairman Dr. Brian Durie answering patient-submitted questions in new original videos for IMF-TV. Whether you’d like to know more about the status of various clinical trials or IMF projects, or have questions about new drug regimens or side effects, you can ask Dr. Durie directly. Submit your questions to AskDrDurie@myeloma.org or via social media using the hashtag #AskDrDurie. And be sure to check out the right-hand column of each week’s Minute for the latest episode.

There has been a lot of discussion lately about crowdfunded campaigns for cancer research and other aid. Crowdfunding is the act of raising money from a large number of individuals on the internet for a specific project or venture, and IMF Chairman Dr. Brian Durie weighs in on what those types of campaigns mean for the cancer community in a new blog post. CLICK HERE to read Dr. Durie’s blog.

This booklet is devoted to an important component of almost all myeloma therapies. The steroid dexamethasone is a synthetic adrenocortical steroid, also known as glucocorticosteroid or corticosteroid. Dexamethasone is one of the most frequently used medications in the treatment of myeloma. It is also known by the brand names Decadron®, Dexasone®, Diodex®, Hexadrol®, and Maxidex®.

This new IMF booklet contains information about monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM).Neither is an active disease state, but both are precursor states to active myeloma. It is therefore important to understand if, when, and how active myeloma might evolve and what monitoring and/or interventions are appropriate. CLICK HERE to download and read “Understanding MGUS and Smoldering Myeloma.”

Access to new drugs outside of the US is frequently delayed by several years following FDA approval in the US, and this delay has a significant negative impact for international myeloma patients. However, a big step has just been taken thanks to the IMF's Asian Myeloma Network (AMN), which has successfully negotiated with the Celgene Corporation to establish an individual or “named” patient access program for pomalidomide in Asia. "This is a model through which patients can gain early access to new drugs which can be literally lifesaving!" IMF Chairman Dr. Brian Durie writes in a new blog.

One of the most daunting aspects of being diagnosed with myeloma is learning about – and understanding – an unfamiliar disease that is quite complicated. The updated 2015 edition of the IMF’s Patient Handbook provides an excellent overview of myeloma. Prepared by Dr. Durie, it focuses on what to do when myeloma is first discovered, the tests you really need, initial treatment options, and supportive care and how to get it. The Patient Handbook is meant to furnish you with the tools to understand and better manage your myeloma. Your caregivers, family, and friends may also find the information useful. CLICK HERE to download a copy of the handbook.

This week, the IMF’s research division, the International Myeloma Working Group (IMWG), published guidelines in the Journal of Clinical Oncology on the use of MRI (magnetic resonance imaging) in myeloma. The IMWG guidelines recommend that all patients with smoldering or asymptomatic myeloma undergo whole-body MRI, or spine and pelvic MRI if whole body MRI is not available. This recommendation is in sync with the IMWG’s “New Diagnostic Criteria” for myeloma, published in November in the Lancet Oncology, in which the presence of more than one MRI lesion is identified as a basis for considering starting full anti-myeloma therapy. The guidelines note that MRI at diagnosis of symptomatic patients (based upon presence of CRAB criteria) provides prognostic information but does not change treatment selection. The IMF’s IMWG is the leader in developing guidelines for the diagnosis, monitoring, and treatment of myeloma. CLICK HERE to read the guidelines. CLICK HERE to watch IMF Chairman Dr. Brian Durie explain the importance of MRI in smoldering myeloma in #AskDrDurie.

This week, IMF Chairman Dr. Brian Durie provides expert insight on the development of drugs for myeloma treatment in his blog. He answers the important questions: “What is the driving force behind new drug development in myeloma?” and “Do we expect new drugs to keep coming?” Dr. Durie writes about the development of myeloma drugs available today and provides insight on where drug development may be headed in the future. READ MORE in his blog.

A mathematical analysis of cancer statistics recently published in the journal Science is generating a lot of attention. The study suggests that many cases of cancer may be the result of random cell mutations or bad biological luck, rather than genetics, behavior, or environmental factors. The research here could lead some to argue that cancer can’t be prevented. But might that attitude be dangerous? IMF Chairman Dr. Brian Durie weighs in with a new blog post on what all of this means.

The #MamboforMyeloma initiative has asked patients, caregivers, doctors, friends, family members, and groups to film themselves dancing and share a donation link for the cause. You don’t have to be an amazing dancer; the spirit is what is important. To date, more than $30,000 has been raised for the IMF through this campaign, and now we are asking you to keep it going. We hope to hit the $50,000 mark by the end of the year.

Two New Sponsors for the Cancer Drug Coverage Parity Act

The IMF Advocacy Team has scored a major victory by adding two new cosponsors to one of our federal bills, HR 1801: The Cancer Drug Coverage Parity Act of 2013. The two new sponsors are Rep. Earl Blumenauer from Oregon’s 3rd district, and Rep. George Butterfield from North Carolina’s 1st district. In total, this brings the number of cosponsors up to 92! We thank both Reps. Blumenauer and Butterfield for their support, and with it we are one step closer to oral parity on the national level.

The 56th American Society of Hematology (ASH) Annual Meeting featured more than 3,000 presentations, with more than 850 focused on myeloma. IMF Chairman Dr. Brian Durie, who moderated several important panels during the ASH meeting, reviews the key myeloma presentations and explains how they fit into the evolving treatment and diagnostic landscapes. CLICK HERE to read Dr. Durie’s blog.

The IMF and its support group team members ruled the social media scene during ASH by sharing the latest updates on Twitter, Facebook, and blogs. The social media analytics company Symplur reports that IMF’s social media team members were among the Top Ten by number of tweets during the ASH meeting, an impressive feat considering that more than 20,000 people attended this major medical conference! See #IMFASH14 on Twitter to review the social media team’s tweets and CLICK HERE to read all blog posts.

The IMF capped off the ASH meeting with Making Sense of Treatment: The International Myeloma Working Group (IMWG) Conference Series. Dr. Durie moderated and he was joined by IMWG members Dr. Joseph Mikhael, Dr. Ola Landgren, and Dr. Antonio Palumbo to tackle the key questions currently facing myeloma doctors and patients in light of the latest research presented at ASH.

Live from San Francisco, where the 56th American Society of Hematology (ASH) Annual Meeting is taking place, leading blood cancer experts, advocacy organizations and patients will put data into perspective, showcasing how scientific advances help patients. A recording of the webcast will be available on December 8th.

Tune in today to watch the IMF’s satellite symposium live from the ASH annual meeting. The presentation, “Critical Issues Need Answers: Providing Best Options for Myeloma Treatments in 2014,” will feature interactive case discussions with “point-counterpoint” sessions from leading myeloma physicians. Topics will include: when to treat smoldering myeloma; assessing response and minimal residual disease following induction therapy; maintenance therapy; and salvage therapy in relapsed/refractory myeloma. The event will be webcast live at 3:30 pm ET/ 12:30 pm PT on Friday, December 5th.

“Extra” caught up with stars Ray Romano, Patricia Heaton and Doris Roberts for a mini “Everybody Loves Raymond” reunion, nearly 10 years after the show said goodbye! The stars talked about how they remember their late co-star and friend Peter Boyle, who died of Multiple Myeloma in 2006.

The IMF’s Nurse Leadership Board (NLB) has authored a white paper on the use of Velcade (bortezomib) in continuous treatment regimens for myeloma. The report was developed at the 2014 Nurse Leadership Board Roundtable Meeting, held in Anaheim, California in April 2014. The white paper reviews the latest clinical data on continuous treatment with Velcade, discusses continuous treatment and management of treatment fatigue, and defines responsibilities of nurses during continuous treatment.

After the success of the ALS Ice Bucket Challenge, some very special myeloma patients and supporters got together to create a fun campaign designed around myeloma awareness. The goal was to make myeloma more well known around the globe, bringing communities together to fight for a cure. The #MamboforMyeloma initiative asks patients, caregivers, doctors, friends, family members, and groups to film themselves dancing and share a donation link for the cause. You don’t have to be an amazing dancer; the spirit is what is important. With #MamboforMyeloma, myeloma patients have the power to be seen and heard, initiating change and sharing their stories. The IMF supports #MamboforMyeloma and encourages you to share your photos and videos, as well as to donate here: https://online.myeloma.org/netcommunity/MamboforMyeloma

Please join the IMF on November 18th at 7:00 PM EST for our next webinar, Health Reform and You: Navigating the Next Open Enrollment Period for Private Health Insurance. A panel of experts from advocacy organizations and policy groups will be present to discuss what cancer patients need to know now about the health insurance world in 2015. Our speakers will provide a broad overview of national policies and provide resources to connect you with what’s going on in your state. We will also discuss how to evaluate plans to support your family’s needs. We encourage all patients and family members with an interest in health care reform to attend, particularly those who are uninsured or under-insured or have an interest in purchasing individual or small group health plans through the marketplaces

The IMF’s popular Living Well with Myeloma Teleconference series returns on Thursday, November 13th with “Management of Bone Disease.” The discussion and Q&A will be led by IMWG member Matthew Drake, MD, PhD, of the Mayo Clinic in Rochester, Minnesota. CLICK HERE to register for the free teleconference, which will be held on Thursday, November 13th at 7 pm ET/ 4 pm PT.

Laughter rocked the Wilshire Ebell Theatre in Los Angeles on Saturday, November 8th, when guests and stars gathered in support of the IMF’s 8th Annual Comedy Celebration benefiting the Peter Boyle Research Fund and supporting the Black Swan Research Initiative®. Comedians and actors including host Ray Romano, Patricia Heaton, Doris Roberts, Danny DeVito, and Lesley Nicol, among many others, presented a special version of “Celebrity Autobiography,” performing hilarious readings of segments of stars’ autobiographies. The night also brought excitement for auction winners who left with items including luxury vacations, signed sports memorabilia, and even a teddy bear handcrafted and donated by a myeloma patient. The performers had the audience in stitches and the event raised funds for critical myeloma research – we’d call that a big success!

On Veterans Day, the International Myeloma Foundation salutes our military veterans and the generations before them who have fought to protect and uphold our nation’s freedom and democracy. You're always here for us, and we're here for you.

To all of the fine men and women who have dedicated their lives to serving our country we offer our heartfelt thanks and best wishes for a Happy Veterans Day!

On November 6, 2014 an FDA advisory panel, the Oncologic Drugs Advisory Committee (ODAC), held a hearing on panobinostat, a drug in development to treat relapsed myeloma. The committee voted not to recommend panobinostat for FDA approval. IMF staff members and myeloma patients testified on behalf of panobinostat, sharing the critical need for an array of treatment options for myeloma patients.

The online auction accompanying the IMF’s 8th Annual Comedy Celebration benefiting the Peter Boyle Research Fund and supporting the Black Swan Research Initiative® is now live! The auction features exciting items that include: several rare guitars, including one signed by all members of the Rolling Stones and another signed by an array of guitar greats such as BB King; a selection of fine jewelry, including his and her Movado watches; and a Vienna, Austria vacation package.

The International Myeloma Foundation (IMF) – improving the quality of life of myeloma patients while working toward prevention and a cure – today announced that the organization’s research division, the International Myeloma Working Group (IMWG), has issued new criteria for diagnosing multiple myeloma. Myeloma is a cancer of cells in the bone marrow that affects the immune system and can damage bone.

The International Myeloma Foundation (IMF) – improving the quality of life of myeloma patients while working toward prevention and a cure – congratulates its Chairman and Co-Founder Brian G.M. Durie, MD, on being honored with the Distinguished Alumni Award from Mayo Clinic. Dr. Durie, who completed residencies and fellowships at Mayo Clinic, was honored at a ceremony in Rochester, MN on October 20, 2014 for his “exceptional contributions” to the field of myeloma.

Patient blogger Cindy Chmielewski shares a blog post detailing her involvement as a patient representative on an institutional review board (IRB). In this role, Cindy is responsible for reviewing clinical research proposals and, with the rest of the board, making sure the rights of the people participating in the clinical research are protected. Although Cindy was nervous before her first IRB meeting, she writes, “Sitting at the table I felt prepared. I knew the language they were speaking thanks to all the education the IMF has given me.”

The IMF’s Director of Europe and the Middle East, Nadia Elkebir, reports on a successful Patient & Family Seminar held this month in Slovakia in conjunction with Slovak Myeloma Society (SMS) & Patient Club. The seminar welcomed 130 patients and family members, and featured presentations from physicians and representatives of myeloma associations throughout Central Europe. In her blog post, Nadia thanks SMS representative Mr. Hrianka Miroslav (at right with his wife, Milada) for his key role in organizing the meeting

A paper recently published in the medical journal Blood claims its authors are “Curing myeloma at last: defining criteria and providing the evidence,” as the paper’s title states. In his blog this week, IMF Chairman Dr. Brian Durie cautions that this is a bold statement. The paper provides a statistical model to predict myeloma patients’ outcomes. Dr. Durie writes, “Achieving and documenting true cure still demands follow-up of individual patients and cannot be predicted by a computer model.”

In two new videos, International Myeloma Working Group (IMWG) member Saad Z. Usmani, MD, of Levine Cancer Institute/Carolinas Healthcare System, describes the role of Freelite and Hevylite assays in monitoring multiple myeloma. These tests that quantify free light chains and heavy chain and light chain pairs provide important measurements that track myeloma response and progression.

A segment last Sunday on the CBS program “60 Minutes” focused on the high cost of cancer drugs. It drew wide attention to an issue that has been the subject of conversation among patients, doctors, and policymakers over the last year. In his blog this week, IMF Chairman Dr. Brian Durie calls for an open dialogue among all parties concerned about high costs, and stresses that we need everyone at the table. The ongoing collaboration within the IMWG is a template for success.

The beginning of fall also signals the beginning of flu season, so now is the time to get your flu vaccine. The IMF recommends annual flu shots for all myeloma patients. CLICK HERE for specific recommendations for patients who have undergone a stem cell transplant and those who may benefit from a high-dose flu vaccine. As always, we recommend you discuss your individual situation with your doctor.

The 2nd Annual Miracles for Myeloma 5K Run/Walk held last weekend in Clark, New Jersey drew over 700 participants and raised more than $110,000 for the IMF! While the race clocked times and named winners, the real goals were to raise awareness of myeloma and raise money for research leading to a cure. The IMF extends a big THANK YOU to event founders and organizers Ron Pask, Sheree Pask, and Gina Klemm, and to all of the participants from New Jersey and beyond!

Did you miss the Medicare 101 webinar? You can watch, listen and learn right from your computer today! Dr. Gretchen Jacobson, Associate Director, Program on Medicare Policy with the Kaiser Family Foundation, covered a range of topics that includes enrollment, the different parts of Medicare, and coverage options.

Last week, medical publication OncLive profiled Dr. Robert A. Kyle, a myeloma pioneer who has improved outcomes for countless myeloma patients and inspired and trained many myeloma researchers and physicians. Since 2003, the IMF has honored an outstanding physician each year with the Robert A. Kyle Lifetime Achievement Award. Dr. Kyle is a founding member of the IMF’s Board of Directors and Chairman of the IMF’s Scientific Advisory Board.

Research has indicated a clear link between toxic chemical exposure and myeloma, and the number of new myeloma cases is on the rise. Some chemicals have been tested, but others that may have links to cancer have not been thoroughly investigated. In his blog this week, IMF Chairman Dr. Brian Durie questions why there is not a greater focus on chemical exposure, and calls on the myeloma community to rally in an effort to decontaminate our planet and the people on it.

Earlier this year, the Mayo Clinic shared exciting results from a clinical trial conducted by Dr. Stephen Russell and his team to test engineered measles virus in myeloma patients. Dr. Russell discussed the approach during the International Myeloma Working Group Conference Series Debate in June. The Mayo Clinic is now enrolling patients in a second clinical trial.

The IMF hosted a successful briefing in Washington, DC called Understanding Environmental Exposures and Cancer: The Case of Multiple Myeloma. The briefing was attended by congressional staff, patient advocacy partners, and myeloma patients. Speakers including Dr. Ola Landgren, Dr. Laura Crowley, and myeloma patient and 9/11 volunteer Patricia Workman highlighted the ongoing health concerns facing first responders and volunteers who risked their lives in the aftermath of the attacks on 9/11, as well as other environmental factors that show a marked increase in myeloma rates over time.

On September 10, 2014 the IMF hosted a successful briefing in Washington, DC called Understanding Environmental Exposures and Cancer: The Case of Multiple Myeloma. The briefing was attended by congressional staff, patient advocacy partners, and myeloma patients. Speakers including Dr. Ola Landgren, Dr. Laura Crowley, and myeloma patient and 9/11 volunteer Patricia Workman highlighted the ongoing health concerns facing first responders and volunteers who risked their lives in the aftermath of the attacks on 9/11, as well as other environmental factors that show a marked increase in myeloma rates over time.

The briefing, along with the messages of support we received from the larger patient community, exposed the need for further assistance to those who might have health concerns in the wake of this national tragedy. Because of those concerns and obvious need, we have created two guides to assist those who were exposed to the hazards at Ground Zero. The guides pertain to the two programs; the World Trade Center Health Program and the September 11th Victim Compensation Fund.

A special blog post from myeloma patient Cynthia Chmielewski details her involvement in various aspects of patient advocacy, including her work as a support advocate, political advocate, and research advocate. Cynthia shares how her thirst for knowledge about myeloma following her diagnosis led her to advocacy. She writes, “I have evolved as a patient and an advocate over the last six years and I have to credit the IMF with being instrumental in my metamorphosis.”

Personalized treatment may be a hot topic, but in his blog this week, IMF Chairman Dr. Brian Durie explains why a broader approach to myeloma treatment should lead to the best outcomes for myeloma patients and ultimately a cure for myeloma. This concept is an important aspect of the IMF’s Black Swan Research Initiative®. Dr. Durie explains, “the goal is to have broadly applicable therapy and learn more from treating larger numbers of patients together, not separately.”

Yoddhas, the first Yoddhas, the first myeloma support group in India, founded by 29-year-old myeloma patient Rahul Yadav, won the People’s Choice Award for best project in the global Youth Citizenship Entrepreneurship Competition. The competition was sponsored by UNESCO, the United Nations Organization for Education, Science and Culture. Congratulations Rahul and Yoddhas! CLICK HERE to learn more about Yoddhas, which means “warrior” in Hindi, and CLICK HERE to learn more about the award.myeloma support group in India, founded by 29-year-old myeloma patient Rahul Yadav, won the People’s Choice Award for best project in the global Youth Citizenship Entrepreneurship Competition. The competition was sponsored by UNESCO, the United Nations Organization for Education, Science and Culture. Congratulations Rahul and Yoddhas! CLICK HERE to learn more about Yoddhas, which means “warrior” in Hindi, and CLICK HERE to learn more about the award.

The International Myeloma Foundation is hosting a briefing to discuss research on links between exposure to environmental factors and multiple myeloma. Speakers at the briefing will discuss the latest research findings and share their personal stories about their experience with multiple myeloma. The audience will learn about multiple myeloma, opportunities to further research, potential environmental risk factors for multiple myeloma, and efforts among patient advocates, industry, researchers and policy makers to reduce the exposure to environmental toxins associated with myeloma.

The New England Journal of Medicine published a study this week showing that Revlimid (lenalidomide) plus low-dose dexamethasone improves survival and other measures of efficacy compared to MPT (melphalan, prednisone, and thalidomide) in newly diagnosed multiple myeloma patients who are not eligible for a stem cell transplant. The study also showed that continuing use of Revlimid-dexamethasone instead of stopping after a fixed number of treatments provided further advantages in multiple measures

The IMF's popular Living Well with Myeloma teleconference series returns on August 28th, with "Understanding the Immune System and Lab Values in Myeloma." The discussion and Q&A will be led by IMF Nurse Leadership Board member Ann McNeill, RN, MSN, APRN-C, Multiple Myeloma Division, Hackensack University Medical Center. The free teleconference will be held on Thursday, August 28th at 7 pm ET/ 4 pm PT.

IMF board member Mike Katz is profiled in the latest issue of the ASCO Post, a publication of the American Society of Clinical Oncology. Writer Jo Cavallo talked with Katz about his advocacy for myeloma patients and how he has helped to alter the standard of care. “I’ve always chosen to live my life as if I didn’t have cancer,” Katz said. “I just face forward and try to do everything I want to do, working around symptoms and treatment side effects.”

Last week, the popular radio show Science Friday broadcast on National Public Radio explored the exciting science around cancer virotherapy. Guest Dr. Stephen Russell of the Mayo Clinic shared his experience treating myeloma patients with massive doses of the measles virus, which Dr. Durie has blogged about in the past. eek, the popular radio show Science Friday broadcast on National Public Radio explored the exciting science around cancer virotherapy. Guest Dr. Stephen Russell of the Mayo Clinic shared his experience treating myeloma patients with massive doses of the measles virus, which Dr. Durie has blogged about in the past.

Two types of tests are currently in development to measure minimal residual disease (MRD) in myeloma patients: a sophisticated new flow cytometry test and a molecular test. In his blog this week, IMF Chairman Dr. Brian Durie examines the differences between the two and explains why, in his opinion, the flow cytometry test is superior.

The US FDA has approved the use of Velcade for retreatment of myeloma patients who have previously responded to Velcade and have relapsed at least six months after their prior treatment. The expanded approval was granted based on data from a phase II clinical trial. This approval includes IV and subcutaneous forms of Velcade.

More cancer cases are being reported among 9/11 rescuers and responders, with more than 2,500 people with cancer now included in World Trade Center health programs. Myeloma is covered under the 9/11 Victim Compensation Fund, and studies have shown that 9/11 workers have gotten myeloma at a higher rate than expected in the normal population. Research has also shown a relationship between myeloma and exposure to carcinogens located at the World Trade Center site. IMF Chairman Dr. Brian Durie has written extensively on myeloma and toxins, and in his blog this week, he examines this troubling growth in cases.

Did you miss the Raise Your Voice: Advocacy 202 webinar last month? Have no fear, you can watch, listen and learn right from your computer today! The webinar focused on how to meet with your Member of Congress and ask for support of HR 1801, The Cancer Drug Coverage Parity Act and S 1879, The Cancer Treatment Parity Act. With enough voices, we can improve the quality of life for myeloma patients by building support for equal access to treatment. Watch the webinar to learn how you can make a difference.

The International Myeloma Foundation (IMF) – improving the quality of life of myeloma patients while working toward prevention and a cure – today celebrates Maine’s Oral Anticancer Treatment Access Law taking effect. The law directs health benefit plans that provide coverage for cancer chemotherapy treatment to extend coverage for orally administered anticancer medications at a cost equal to the cost of intravenously administered or injected anticancer medications.

Minimal residual disease (MRD) measurement through flow cytometry was shown to be a meaningful predictor in a frontline myeloma study published this month in the Journal of Clinical Oncology. In his blog, IMF Chairman Dr. Brian Durie explains that patients who achieved MRD-negative status remain in remission after a median follow-up of three years. This study “points the way to incorporation of MRD testing by flow cytometry into tailored approaches to achieve the very best results with therapy throughout the course of disease,” said Dr. Durie.

Nearly 100 myeloma support group leaders gathered in Dallas, Texas over the weekend for the IMF's 15th Annual Support Group Leaders Summit. "During the year, these leaders give their all to their myeloma support groups," said Robin Tuohy, IMF Senior Director of Support Groups. "At the Summit, we give THEM as much as we can so they can share with their members the latest news about myeloma treatment, clinical trials, best practices for running a support group, and - perhaps most important of all - a chance to create lifelong bonds with fellow leaders across the nation." Leaders were instructed in the practice of tai chi (right) as a relaxation tool to pass along to their members.

This booklet is devoted to two tests used in the diagnosis and monitoring of myeloma, the serum free light chain assay (Freelite®) and the serum heavy/light chain assay (Hevylite®). Since Freelite and Hevylite are independent biomark­ers of disease activity, it is important to monitor patients with both tests.

Ushering in a new phase for the IMF and myeloma patients, the new logo reflects forward movement and hopefulness. This mirrors the significant progress being made in myeloma treatment, including the exceptional progress being made under the IMF’s signature Black Swan Research Initiative® to find a pathway to a cure for myeloma.

Binding Site, a Birmingham, UK, based In-Vitro clinical diagnostic company, is pleased to announce that it has been chosen as an important diagnostic partner in the Black Swan ‘cure myeloma’ Research Initiative, sponsored by the International Myeloma Foundation (IMF).

The IMF awards Brian D. Novis Junior and Senior Research Grants each year to "provide much-needed funding support for research projects being conducted by the best and the brightest in our field," according to IMF President Susie Novis. Funding grants since 1994 to honor IMF Co-Founder Brian D. Novis, the IMF is now the premier funder of myeloma research grants, having awarded over 115 grants that have opened the doors to new ideas and major advancements in treatments. Applications for 2015 grants are due by August 1st.

Imnovid (pomalidomide), called Pomalyst in the US, was recently approved for reimbursement in Sweden, Spain, and Switzerland. Myeloma patients in these countries who have exhausted all other therapeutics will now have access to Imnovid through their government health programs. “Through our Black Swan Research Initiative®, the IMF is working to find a cure for myeloma,” said Susie Novis, "but in the meantime we are pleased to see that new innovative treatments are becoming available to more patients worldwide, and the IMF continues to fight for patients where access is not yet available."

A new IMF publication is available to help patients manage the painful and common problem of vertebral compression fractures (VCF), which can occur when bones in the spine are too weak to withstand the pressure placed upon them. The fractures can cause a number of painful issues.

The IMF's International Myeloma Working Group (IMWG) held its 5th Annual Summit this year in Milan, Italy from June 9th-11th. Part 2 of IMF Medical Writer Debbie Birns’ comprehensive report on key developments from the Summit is now available HERE. It covers geriatric risk stratification; debates on frontline treatment options; new treatment approaches, such as virotherapy and immunotherapy with transgenic T-cells and chimeric antigen receptors; and new drugs in development.

The IMF hosted the second annual Global Myeloma Alliance (GMA) Summit in Milan, Italy in June. The GMA, an advocacy initiative of the IMF that was established to mobilize the myeloma community to improve the lives of patients around the world, is a patient-driven alliance of organizations and individuals. Thirty members of the GMA from 17 regions attended the Summit, where they charted a course to foster further collaboration to achieve GMA’s goals.

The IMF's International Myeloma Working Group (IMWG) held its 5th Annual Summit this year in Milan, Italy on June 9th-11th. This research division of the IMF now has more than 170 members worldwide. The mission of the IMWG Summit is to identify, support, and implement the most promising research to prevent onset of active disease, improve treatment, and find a cure for myeloma. This year's Summit featured a packed agenda. A full report from the Summit by IMF Medical Writer Debbie Birns will be available in two parts. Part 1 today summarizes the first two keynote lectures. The major outcomes from this year's Summit are also presented in IMF Chairman Dr. Brian Durie's teleconference "2014 Mid-Year Update: Post ASCO/EHA/IMWG."

Learn more about current trends in myeloma treatment and research with this update from three major medical meetings held in June 2014. Dr. Brian G.M. Durie will explain what's new and exciting from the American Society of Clinical Oncology (ASCO), the European Hematology Association (EHA), and the International Myeloma Working Group Summit (IMWG)
Thursday, June 26, 2014 at 4:00 PM

The International Myeloma Foundation (IMF) – improving the quality of life of myeloma patients while working toward prevention and a cure – applauds Gov. John Kasich of Ohio for signing SB 99, The Cancer Treatment Modernization Act, into law. The bill requires that health plans regulated by the state that provide coverage for IV and oral anticancer treatments not exceed $100 copayment or coinsurance for a 30-day supply of orally administered anticancer treatment.

Mr. Katz was chosen as this year’s recipient because of his efforts to raise awareness and education about myeloma in addition to his participation in the development of clinical trials of new drugs to treat this disease. He currently serves as vice president and as an executive board member of the International Myeloma Foundation (IMF) and is a member of the Eastern Cooperative Oncology Group’s (ECOG) Executive Committee.

The IMF continued its outreach to myeloma patients around the world by co-sponsoring a patient meeting in Bari, Italy, along with the Italian blood cancer patient group AIL Pazienti (Associazione Italiana contro le Leucemie, Linfomi e Mieloma).

At the IMF, we know that to make a difference we must all come together and do what we can. With enough voices, we can improve the quality of life for myeloma patients by advocating for more research funding, insisting on quality health care, and educating the communities around us on this deadly disease. Whether you are a patient, caregiver, doctor, nurse, or friend, your voice and your story make a difference!

On May 6th, the IMF's Director of Europe and the Middle East, Nadia Elkebir, visited the King Hussein Cancer Center (KHCC) in Amman, Jordan. This renowned stand-alone comprehensive cancer center attracts patients from all over the Middle East, the Gulf region, and North Africa. The IMF will work in partnership with KHCC to reach myeloma patients throughout the region.

Research studies published in medical journals this week could have important implications for myeloma patients down the road. A study published in the journal Leukemia looks at cell pathways that could help explain the link between obesity and myeloma. Two other studies identify molecules in the blood of young animals that have a beneficial effect on several health issues in older animals. In this week's blog, Dr. Brian Durie, IMF Chairman and Co-Founder, discusses the findings and what they could mean for myeloma patients.

If you're still looking for the perfect gift for Mother's Day, you still have a few days to shop online through the IMF Mall. The IMF Mall includes a number of stores, from Amazon and Avon to 1-800-Flowers and iTunes, that allow you to contribute to the IMF while shopping. By visiting these shops through the links on the IMF Mall page, a percentage of your purchase is donated to the IMF—all at no extra cost to you.

The IMF's popular "Living Well with Myeloma" teleconference series returns on May 8th, with "Stopping to Breathe While Moving Forward." IMF Nurse Leadership Board Member Beth Faiman, PhDc, MSN, APRN-BC, AOCN, Certified Nurse Practitioner at the Cleveland Clinic, will lead the discussion and Q&A. The discussion will focus on the benefits of rest, relaxation, exercise, and nutrition for long-term management of multiple myeloma. Click HERE to register for the free teleconference, which will be held on Thursday, May 8th at 7 pm ET/ 4 pm PT.

The IMF strongly supports and has officially endorsed H.R. 543, the Blue Water Navy Vietnam Veterans Act of 2013, and H.R. 1494, the Blue Water Navy Ship Accountability Act. These important bills would ensure that Navy veterans who served during the Vietnam War and were exposed to Agent Orange, a carcinogen that can lead to higher incidence of myeloma, receive healthcare coverage.

In the article "An Apple a Day, and Other Myths," the New York Times looks at the latest research on diet and cancer. Many studies over the years have suggested certain foods have cancer-fighting or cancer-causing properties, only to be disproved by the next study. Dr. Walter C. Willett, a Harvard epidemiologist who has spent many years studying cancer and nutrition, told the New York Times, "Diet and cancer has turned out to be more complex and challenging than any of us expected." While scientific evidence linking particular foods to cancer may be scarce, researchers agree that controlling obesity is important when it comes to cancer and overall health

The International Myeloma Foundation (IMF) applauds Kentucky Gov. Steve Beshear for signing HB 126 (The Cancer Treatment Modernization Act) into law. The bill requires health plans regulated by the state that provide coverage for IV and oral anticancer treatments- to not exceed $100 copayment or coinsurance for a 30-day supply of orally administered anticancer treatment.

The IMF's Chinese Myeloma Working Group (CMWG) held its annual meeting from April 9-13th in Hangzhou, China. The IMF's Asia Pacific team members, President Susie Novis, and Chairman Dr. Brian Durie traveled to China to participate in the meetings and activities. A highlight was a patient seminar held at Zhejiang University 1st Affiliated Hospital in Hangzhou, which was attended by approximately 200 patients and family members. During the seminar, Dr. Durie answered patient questions (with the help of a translator) for over an hour. Click HERE to read more about the meetings and patient seminar, which Dr. Durie calls "an amazing, heartwarming, and heart-wrenching program" in his blog post.

The IMF's Nurse Leadership Board (NLB) will host a satellite symposium during the Oncology Nursing Society's (ONS) 39th Annual Congress in Anaheim, California on May 1st. Leading myeloma nurses will discuss the best practices, cutting-edge research, and their own personal experiences with myeloma patients in an exciting and informative presentation. Presenters will discuss therapy combinations, newly approved myeloma drugs, specific cases (such as smoldering versus relapsed/refractory myeloma), and nursing management of patients. This event is one example of the NLB's exceptional work to bring expert myeloma advice to nurses in all communities. Click HERE for the event's agenda and/or to register.

The IMF's signature Black Swan Research Initiative® and IMF Chairman Dr. Brian Durie were featured this week in TargetedOnc.com, an online publication aimed at oncologists that focuses on the next stage of cancer development and cutting-edge therapies. "Minimal Residual Disease (MRD) Marches to Front Line of Myeloma Research" takes a comprehensive look at the increasingly important role MRD testing will play in future myeloma treatment and forging the pathway to a cure.

Today in Milwaukee cancer patient advocates, including myeloma Support Group members Linda Chowa and Mary Sandberg, at right, looked on as Wisconsin Governor Scott Walker signed the Cancer Treatment Fairness Act (SB 300) into law, making Wisconsin the 30th state to enact anticancer drug parity legislation. "This bill shows that our voices do indeed make a difference, because SB 300 was on its deathbed just three weeks ago, and today it is law," said Sue Enright, Midwest Director of Support Groups for the International Myeloma Foundation. "Thank you to every patient, family member, friend, healthcare professional and advocate who relentlessly stood with us throughout this long journey, and to our Wisconsin legislators who voted in favor of the bill."

A significant event in the evolution of the IMF's Black Swan Research Initiative® occurred this past weekend in Salamanca, Spain. On March 21-22, the IMF-EuroFlow Workshop focused on a breakthrough in the standardized detection of minimal residual disease (MRD) in myeloma using a new automated and highly sensitive flow cytometry technique. "More than 70 participants from 13 countries gathered to learn the exciting details," writes Dr. Brian Durie, IMF Chairman and Co-Founder, in this week's blog.

Congressman Brian Higgins (NY-26), a member of the House Cancer Caucus, spoke on the House Floor to recognize National Multiple Myeloma Awareness Month and to advocate for increased funding for medical research and passage of H.R. 1801, the Cancer Drug Coverage Parity Act.

Palm Coast Florida couple Arnie and Maxine Levine shares how they have adapted their lifestyle to deal with living with Multiple Myeloma in an uplifting news article published in the Palm Coast Observer.

A clinical trial is enrolling newly diagnosed myeloma patients at over 100 medical centers in North America and Europe. This is a Phase 3 clinical trial in which the investigational oral drug MLN9708 is being studied in multiple myeloma to determine whether MLN9708 – taken in combination with lenalidomide and dexamethasone – may potentially slow the disease growth. Patients will have a 50 percent chance to receive either MLN9708 in combination with lenalidomide plus dexamethasone or a placebo in combination with lenalidomide plus dexamethasone. To learn more about this study and how to participate

On March 19th, Governor Jay Nixon of Missouri signed SB 668, the Cancer Treatment Fairness Act, into law, making Missouri the 29th state to pass oral anticancer treatment legislation. This law puts in place a cap of $75 per prescription per month for oral anticancer medications under private insurance plans. Thanks to the great work of our Missouri ACTION team, who delivered over 375 postcards to Governor Nixon requesting his signature on the bill, many more cancer patients in Missouri will have affordable access to all anticancer treatments. Catch up on what is happening in seven other states with As the Bill Turns: Episode 11.

Florida Panhandle Multiple Myeloma Support Group members are using their voices during Myeloma Awareness Month. Support group members Sarah Davis, Mike Davis, and Sheila Wilson were interviewed on the radio in Panama City, Florida by Powell Broadcasting's Tiffany "Flip Flop" Dunning about myeloma, treatment options, recent advances, and advocacy. The interview aired on Sunday, March 16th on four Florida radio stations, and the archive can be heard

The International Myeloma Foundation (IMF) – improving the quality of life of myeloma patients while working toward prevention and a cure – applauds leadership and members of the Wisconsin state Senate, for passage of SB 300 (Alberta Darling- R) today, by a vote of 30-2!

The Rockwall County Commissioners Court proclaimed the month of March as Multiple Myeloma Awareness Month for the county during its regular meeting on Tuesday thanks to Darla Kubik of the North Texas Multiple Myeloma Support Group.

IMF Executive Board member Michael S. Katz is the recipient of the American Society of Clinical Oncology (ASCO) 2014 Partners in Progress Award. The award recognizes Mike's "exceptional achievements, outstanding work, and dedication" as a myeloma advocate. The Partners in Progress Award honors the accomplishments of an extraordinary patient advocate whose work has impacted public awareness or resulted in additional support for cancer research, treatment, prevention, or care. "Working with the IMF and others to help patients and caregivers and to advance myeloma research is an important and an incredibly rewarding part of my life. I am grateful to the community and to ASCO for this very special honor," said Mike. He will be presented with the award at a ceremony on June 2, 2014 during ASCO's 50th Annual Meeting in Chicago, Illinois. The IMF congratulates Mike on this prestigious recognition!

The International Myeloma Foundation and the State Patients Equal Access Coalition (SPEAC) applaud Maine lawmakers for their hard work in passing legislation that requires private insurance companies to charge patients taking oral anticancer medications the same out-of-pocket cost as those receiving intravenous and infused therapies. Maine is the 28th state (along with the District of Columbia) to pass this important legislation. We are pleased that many more cancer patients in Maine will have affordable access to the most effective treatment to treat their disease and look forward to adding more states to the list in 2014.

The IMF's mobile application was designed to regularly update anyone interested in myeloma with the latest news and information from the IMF website. The Myeloma Post was first released for iOS in 2012, but is now available for Android devices as well. Designed to share updates on educational programs, quality-of-life support resources, advocacy activities, and stories from patient and caregiver blogs and communities, the Myeloma Post is free of charge and updated regularly (often daily).

Monica Taylor, chairperson of Jamaica Multiple Myeloma Support Group, tells her experience with Multiple Myeloma and how she started helping others afflicted with the disease through the help of the International Myeloma Foundation.

Tom Brokaw's announcement of his multiple myeloma diagnosis has put myeloma in the spotlight recently. But myeloma has been on Linda Huguelet's radar since her own diagnosis in 2010. Linda, who leads a support group for myeloma patients and family members in Chattanooga, Tennessee, was interviewed by WRCB-TV as a follow-up to the Brokaw news about her treatments, as well as her wishes for Brokaw. "I hope he will bring more recognition to multiple myeloma," she said.

IMF Support Group Leader Shirley Jonas heads campaign for Bismarck, North Dakota Mayor John Warford to declare March as Myeloma Awareness Month. “This recognition is important to me because I feel it is important to inform the public of this type of cancer as it is being diagnosed more every year,” said Jonas. “I also want Myeloma patients in North Dakota to know that they are not in this journey alone and they can be a part of our support group and may call to talk about any questions or concerns they have about this cancer. Knowledge is Power!” “Our support group is a place where people with myeloma and their families can learn about the newest treatments available and gain support and education from those who have been living with the disease,” said Jonas.

The International Myeloma Foundation (IMF) - improving the quality of life of myeloma patients while working toward prevention and a cure - today said marathoner Don Wright is on his way to running 100 marathons, even though he is 73 years old and is undergoing treatment for cancer. Don will be running in the 12th annual Little Rock, Arkansas Marathon on March 2nd at the start of Myeloma Awareness Month. Don began running marathons at the time he was diagnosed with the blood cancer multiple myeloma in 2003. It will be his 79th marathon since then; Don completed his 78th marathon in New Orleans in February. Don will cap Myeloma Awareness Month with his milestone 80th marathon in Ann Arbor, Michigan on March 30th.

The Vermont town of Bennington has officially declared March "Myeloma Awareness Month." Sculptor and myeloma patient Jan Martin Bopp accepted the proclamation from town officials last Friday on behalf of the International Myeloma Foundation, noting that "Having been a professional educator for all of my professional career, I'm going to continue to educate people about myeloma."

Former NBC News anchor Tom Brokaw's announcement this week that he has multiple myeloma is shining a national spotlight on what is, for many people, a little-known cancer. "We were saddened to learn that Tom Brokaw has multiple myeloma and everyone at the IMF wishes him well," said IMF Chairman Dr. Brian Durie. "Fortunately, advancements in myeloma research and treatment make it possible for many patients to live active lives for years. His courageous announcement raises awareness of myeloma – which is absolutely critical to ensuring positive outcomes."

As implementation of the health reform law (the Affordable Care Act) continues, the International Myeloma Foundation (IMF) is pleased to announce the launch of a Spanish language version of the successful resource, the Cancer Insurance Checklist. This easy-to-use guide is available to assist people with cancer, a history of cancer or at risk for cancer choose a health insurance plan.

Regular, long-term aspirin use was associated with a decreased risk for multiple myeloma, according to results of a study published in the journal Cancer Prevention Research. "This finding fits in with a lot of the research which shows that inflammation leads to oxidation that causes genetic damage," notes Dr. Brian G.M. Durie, MD, Chairman of the International Myeloma Foundation, in his blog this week.

Multiple myeloma is the second most common blood cancer. Yet the majority of patients have never heard of it until they are told they have the disease. To help raise awareness, the International Myeloma Foundation (IMF) in 2009 declared March “Myeloma Awareness Month.” Last year over 60 cities and four states did the same. Increasing awareness of this devastating disease can lead to increased funding for research and ultimately save lives. Awareness can lead to patients asking whether their doctor has considered myeloma as a possible cause for their symptoms and can lead to earlier diagnosis.

In 2013 cities, counties and states across the country declared March Myeloma Awareness Month. We are thrilled to build on the success of last year's drive for proclamations declaring March as Myeloma Awareness Month in your city or county. The Proclamation 2014 Leadership Team has created a helpful how to guide for you or a member of your group, as well as many sample resources to help you make this a reality.

Join IMF Chairman Brian G.M. Durie, MD, in a teleconference and Q&A on January 16 7pm ET/ 4pm PT as he highlights key information he has gleaned from over 800 myeloma abstracts presented at the 2013 annual meeting of the American Society of Hematology (ASH) that will have the biggest impact on myeloma patients, now and in the future.

In his blog this week, IMF Chairman Brian G.M. Durie, MD, discusses the important Black Swan Research Initiative® (BSRI®) goals achieved ahead of schedule in 2013 and looks ahead to the exciting work to come in 2014. As Dr. Durie explains, researchers have identified procedures to measure when zero Minimal Residual Disease (MRD-Zero™) has been achieved, and BSRI "is moving into high gear in the new year."

U.S. Sen. Al Franken (D-Minn.) and Mark Kirk (R-Ill.) took a key step toward ensuring access to the best cancer treatments for patients across the country by unveiling a bipartisan bill to end the unfair practice of allowing insurance companies to charge more for certain chemotherapy drugs. READ MORE ...

ASH 2013 videos are now ready to be viewed. Tune in as the IMF brings you the highlights of the 55th annual meeting of the American Society of Hematology (ASH), an exciting convergence of 20,000 health care professionals from around the world.

Looking for something special to give your friends and family this holiday season? Check out the items in our holiday store. Your purcheses support the programs of the IMF. But order early! Many of the items are custom made, so the earlier you order the better!

The International Myeloma Foundation says findings to be presented at this year's annual ASH meeting shed new light on when, how long and how much to treat myeloma patients.

–More Than 800 Myeloma Studies Will Be Featured at the 55th Annual Meeting of the American Society of Hematology (ASH)
–The IMF Will Present Several Educational and Informational Programs, and Update the Status of Its Groundbreaking Black Swan Research Initiative® to Find a Cure

Tune in as the IMF brings myeloma support group leaders and patients to New Orleans for the 55th annual meeting of the American Society of Hematology (ASH), an exciting convergence of 20,000 health care professionals from around the world. Start following the IMF ASH team members now on social media as they ramp up to share the latest clinical updates in myeloma research, therapies, and practice strategies via Twitter (#ASH13IMF), Facebook, blogs and videos.

We kindly request your help for Canadians living with myeloma. Myeloma Canada, an international affiliated partner of the IMF, is participating in a Canadian government funding review process for the treatment of myeloma with pomalidomide (Pomalyst®) and needs our help.

This year, the International Myeloma Foundation proudly joins thousands of charities around the world in supporting Giving Tuesday - a day for us all to remember to give back. Support the IMF on December 3rd with your tribute gift and send someone you love one of three special edition holiday e-cards.

Experts discuss everything you need to know to apply for health insurance coverage through the new health insurance marketplaces plus questions that ALL myeloma patients should ask when searching for a new insurance plan.
Learn where to apply, who can help, and what to keep in mind as a myeloma patient. The speakers will provide a broad national overview of these policies, and give you resources to learn more about what is happening in your state.

The IMF has long been a resource for veterans seeking information about myeloma – like Jerry Walton (pictured), a 33-year Navy veteran who founded the Southeastern Virginia Multiple Myeloma Support Group. Now that effort expands with the launch of the IMF's new Veterans Against Myeloma (VAM) website. The site provides links to relevant Veterans Administration information, to state veterans assistance offices and to national veterans service organizations. Email alerts will notify VAM readers about breaking news and articles of interest

The IMF team reviewed the more than 800 ASH 2013 abstracts that were released last week and identified 131 myeloma abstracts worthy of specific comment. One of the top plenary session abstracts for ASH this year is the MM-020 study of Revlimid in newly diagnosed myeloma patients, says IMF Chairman Dr. Brian Durie. In the first of his two-part overview of the ASH 2013 abstracts, he focuses on those that looked at novel agents

Aimee Martin, the IMF's Grassroots Liaison, traveled to Madison, Wisconsin last week to train and support local advocates during a day of successful meetings with their state legislators. The advocates met with their state senators and representatives to discuss the Wisconsin Cancer Treatment Fairness Act, telling their legislators why equal coverage for oral anticancer treatment is so important for patients. Check out Aimee's photo blog to see how the day unfolded and read about how the advocates impacted their legislators.

Shop at Amazon, receive the same selection and price as usual, and support the International Myeloma Foundation at the same time! Visit Amazon using the special link below, make your purchases the same way as you always do, and Amazon will donate up to 6% of your purchase to support the IMF. Here is the special link: http://amazon.myeloma.org

Arin Assero, IMF Vice President of Global Advocacy, traveled to South Korea last week to attend the annual myeloma seminar hosted by the Korean Blood Cancer Association (KBCA) and the Korean Multiple Myeloma Working Party. She spoke to the meeting's 250 attendees about how they could be advocates, and forged bonds with a patient organization affiliated with KBCA to collaborate on organized advocacy efforts.

The University of Texas MD Anderson Cancer Center has announced that it will partner with IBM's Watson supercomputer to fight cancer – specifically leukemia. But myeloma patients may well ask: "What can Big Data do for me?" In his blog this week IMF Chairman Dr. Brian Durie describes how the IMF's research arm—the International Myeloma Working Group—uses Big Data smartly to categorize and treat myeloma patients.

The drug denosumab is approved for the prevention of skeletal-related events in patients with bone metastases from solid tumors, but its effects in patients with multiple myeloma need to be further studied. The drug is a fully human monoclonal antibody against RANK ligand, a protein critical for osteoclast formation, maturation, and function. An international clinical trial of denosumab is underway to help determine if it can prevent skeletal-related events in myeloma.

In cancer, CT may be used to help detect abnormal growths; to help diagnose tumors; to provide information about the extent, or stage, of disease; to help in guiding biopsy procedures or in planning treatment; to determine whether a cancer is responding to treatment; and to monitor for recurrence.

A recent article in the New York Times draws attention to how cancers survive and evade the immune system and highlights a new book, "The Compatibility Gene: How Our Bodies Fight Disease." The key point for myeloma research is that inactivation of T-lymphocyte cells and natural killer cells—which should be killing myeloma cells—occurs through a mechanism called the PD-1/PD-L1 system. In Dr. Brian Durie's blog this week, he examines what this means for myeloma patients

IMF advocate Tom Chellius and National State Affairs Consultant Zina Cary testified this week at a hearing held by the Wisconsin State Senate Insurance & Housing Committee in support of Senate Bill 300 (Cancer Treatment Fairness Act). The bill would require insurers in Wisconsin to cover oral anticancer therapies at rate equal to intravenous, or IV, treatments. Joining the IMF in the packed hearing room were members of the Wisconsin Coalition for Cancer Treatment Access (WCCTA) and the bill's legislative champions, State Senator Alberta Darling and State Representative Pat Strachota.

Miracles can happen. Myeloma is a rare form of cancer that took a back seat on Saturday, October 5, 2013 when more than 450 runners/walkers joined together at the "Miracles for Myeloma" race to raise money and awareness for research for this deadly disease.

IMF's Nurse Leadership Board (NLB) members review the use of proteasome inhibitors and immunomodulatory agents (IMiDs) in myeloma treatment in the current issue of the Journal of the Advanced Practitioner in Oncology. "The integration of novel agents into the treatment of multiple myeloma has shifted the focus from an incurable disease to one that is chronic, with a realistic hope of someday achieving a cure," write the article's co-authors, Sandra E. Kurtin, RN, MS, AOCN®, ANP-C, and Elizabeth Bilotti, MSN, RN, APN, OCN®. Publishing this guide supports the NLB's mission to develop broad recommendations for myeloma care.

Over the past few months, even while some state legislatures were closed for summer recess, there has been important progress on key oral parity bills, and more action is expected in the coming weeks. Bills are moving forward in Wisconsin, Ohio and Michigan, while the IMF is working against changes made by the sponsors of California's oral parity bill that decrease its effectiveness.

This Saturday, October 5th will mark the first annual Miracles for Myeloma 5K Run/Walk in Clark, New Jersey. Event organizers hope the 5K inspires hope and gives strength to patients and their families, while supporting the IMF's research to find a cure for myeloma. Among the runners (or walkers!) will be Suzanne Battaglia, IMF Director of Member Events, from the IMF's headquarters in California. Come meet Suzanne, the event organizers, and new friends this Saturday!

Because of the US government shutdown, new clinical trials that would have begun at the National Institutes of Health (NIH) are being deferred until the government resumes operation. Existing clinical trials are continuing, but newly registered patients are not being admitted into any trials. According to CNN, each week about 200 new patients begin participating in clinical trials at the NIH Clinical Center in Bethesda, Maryland. Research will continue at other institutions that have received NIH grants, but the NIH is not accepting new grant applications at this time.

The US Federal Government entered a partial shutdown on October 1 suspending services deemed 'unessential.' The shutdown was a result of the government's failure to enact regular appropriations or a continuing resolution for the 2014 fiscal year. This is the first U.S. federal government shutdown since the shutdown of 1995 and 1996. Read about how the current government shutdown will affect cancer patients.

Earlier this year the IMF launched the Black Swan Research Initiative™, a breakthrough approach to finding a cure for myeloma. Following in our footsteps, others are ramping up their myeloma research efforts. This is great news for myeloma patients, but BSRI's unique approach to finding a definitive cure for myeloma sets it apart from all other myeloma research efforts. IMF Chairman Dr. Brian Durie explains what makes BSRI different in his new blog.

This free resource guide from Meals To Heal offers a wealth of information for cancer patients, caregivers and other individuals seeking to improve their nutrition and physical fitness regimes. A joint effort of Meals to Heal, LIVESTRONG and the American Institute for Cancer Research, the HEAL Well Nutrition Guide can be downloaded or printed for your easy reference. Happy reading!

The IMF joined legislators and representatives from other cancer patient advocacy organizations to raise awareness for funding the impressive collaborative research that is lengthening the lives of myeloma patients each day.

Learn more about September's Advocate of the Month, Tom Chelius. Tom’s vivacity and humor through his 6.5 years with myeloma is a fabulous addition to the ACTION team and to the support group members he inspires to get involved regularly.

Myeloma patients experience fatigue for a variety of reasons. It can be caused by the disease, by treatment, and by the understandable anxiety and/or depression that affects many. The IMF's new booklet "Understanding Fatigue" contains a thorough examination of the causes of myeloma fatigue, strategies to help cope with it, and suggestions for discussing fatigue with your doctor. Part of the IMF's "Understanding" series, this booklet is an online-only publication.

IMF's Advocacy team this week registered its disappointment with amendments recently added to the original bill (AB 219) to increase the cap for out-of-pocket expenses from $100 to $200for patients taking oral anticancer treatments. The original intent of this bill was to eliminate the cost disparity between oral and intravenous anticancer medications, ensuring access to all anticancer medications for cancer patients. Additional proposed changes allow insurers to increase the cap over time, delay the implementation date until 2015, and sets the law to expire in 2019. California voters can contact their state senators to oppose the amendments.

Alcohol consumption may be associated with reduced risk of multiple myeloma, according to newly published research. Dr. Brian Durie, IMF Chairman, ponders the explanations for these findings in his blog this week. The key, he says, is moderation.

"The Black Swan Research Initiative team has been busy since our spring launch," writes IMF Chairman Dr. Brian Durie in his blog. "We already know where we want to end up—curing this destructive disease—but as we move ahead our key focus is discovering the best route or routes, as the case may be, to get us there."

Cancer Today looked at how insurance reimbursement issues impact cancer patients who are prescribed oral drugs. As the article notes, the IMF and other advocacy organizations have worked to get oral parity laws passed in 26 states and Washington, DC in just the past five years

Making Miracles is our way of saying "thank you" to the members who support us in various ways, including our grassroots member fundraiser program. This semi-annual newsletter produced by the development department serves double duty—as a platform for recognizing our dearest supporters and as inspiration for those who want to find ways to get more involved.

There have been several recent FDA approvals in myeloma-- all of which are oral medications. But what if your doctor suggests a medication for you and your insurance won't cover it? Unfortunately many patients experience this throughout the US...and throughout the world. Meghan Buzby, Director of US Advocacy for the International Myeloma Foundation, discusses the obstacles to accessing myeloma treatment and explain what patients can do to make a difference.

Excitement over the launch of the IMF's Black Swan Research Initiative (BSRI) is spreading throughout the myeloma community. In this video interview with Patient Power's Andrew Schorr, Dr. William Bensinger, Seattle Cancer Care Alliance myeloma expert, describes the "enormous" progress in myeloma treatment in the last 15 years, which has set the stage for the BSRI's undertaking to find a definitive cure. Myeloma isn't just one disease, says Dr. Bensinger, who is a member of the International Myeloma Working Group. "It's several different sub-clones of disease. Understanding what those subtypes are and how best to eradicate them is part of this initiative."

This booklet is about a drug that is used only for patients with relapsed and refractory myeloma. It pres­ents information on Pomalyst® and how it works, the results of clinical trials and ongoing research with Pomalyst, how and when to take Pomalyst, and its possible side effects and how to manage them.

The study from the PETHEMA Group in Spain Says an Oral Treatment Regimen “Significantly Delayed Time to Progression” with an Overall Survival Benefit in High-Risk Smoldering Myeloma.
Study Published in the Prestigious New England Journal of Medicine.

This coming fall, Illinois will begin enrolling people in a new health insurance program that will help millions of Illinois residents buy health insurance- some for the first time. Come learn about how this program, as well as changes to Medicare and Medicaid, could help YOU and what it means to cancer patients.

If you are living near Chicago, IL and you or a family member has been diagnosed with Multiple Myeloma, we invite you to join our Patient and Family Seminar on Aug 9-10 at the Renaissance Hotel North Shore. Click on the link for more details.

Learn more about current trends in myeloma treatment and research with this update from three major medical meetings held in June 2013. Dr. Brian G.M. Durie explains what’s new and exciting from the American Society of Clinical Oncology, the European Hematology Association, and the International Myeloma Working Group Summit.

Health Reform and You Teleconference Series: The ABC's of the ACA for Private Health Insurance

When: Thursday June 13th 7pm EDT/ 4pm PDT

Who: Cancer patients and family members who want to learn about health care reform and how it will affect them, and in particular uninsured or under-insured individuals, and people interested in purchasing individual or small group health insurance through the newly created health insurance marketplaces.